Newly diagnosed please help.

[spacecadet]

I had my 19 week scan and was told the following. Head: Lemon shaped. Brain Ventriculomegaly both sides, 12- 13 mm. Banana shaped Cerebellum. Spine: Lumbar - sacral Spina Bifida over 9 segments. Arnold Chiari Malformation.

Scan confirmed lumbosacral meningocoele from L2 to S4, no neural tissue in the sac.

Prognosis of double incontinence with affectation of lower limb function. Might also be affectation of mental status. In general would expect baby to have reduced quality of life.

Please can you give me some idea of what this really means.

Thanks

[LisaJoy]

Hi! So glad you found us. I'll see if I can help.

Head: Lemon shaped. Brain Ventriculomegaly both sides, 12- 13 mm.

Your baby has very mild hydrocephalus. The measurement ##s could get larger over the course of your pregnancy, but it really doesn't matter because the fetal skull is very soft and will expand to accommodate the fluid. If needed, they'll place a shunt after birth. Sometimes the hydrocephalus resolves itself, but 90% of babies with myelomeningocele SB have a shunt. 80% of those with shunts have normal or above average intelligence.

Banana shaped Cerebellum... Arnold Chiari Malformation.

Banana cerebellum is just the radiology term for Chiari malformation. This is where the brain stem gets tugged slightly downward from its normal position by the spinal cord. Virtually everyone with MMC SB has this; the vast majority have no problems as a result.

Scan confirmed lumbosacral meningocoele from L2 to S4, no neural tissue in the sac.

This is a relatively large lesion, but the "no neural tissue" part is outstanding! If this diagnosis is correct, your baby could have minimal nerve damage.

Prognosis of double incontinence with affectation of lower limb function. Might also be affectation of mental status. In general would expect baby to have reduced quality of life.

This is a worst-case scenario. Yes, most people with sb have some degree of urinary and bowel incontinence. However -- the vast majority achieve "social continence" -- in other words, they stay dry and clean using different measures from most people. (Self-catheterization & a bowel program being the most common.) If there is truly no neural tissue in the sac, there could be minimal effect on the legs. There's no way to know for sure until your baby arrives. And, as I said before -- the vast majority of people with sb & hydrocephalus have normal or above average intelligence. There's absolutely nothing in this report that would lead me to believe your child will have a reduced quality of life. S/he may do some things differently -- but that has nothing to do with quality of life. Even if s/he uses a wheelchair -- that's just a tool for getting around. Not a big deal if approached with the right attitude.

OB/GYNs & radiologists & maternal-fetal medicine specialists are notoriously negative about SB diagnoses. DO NOT LISTEN TO THEM. You must see a pediatric neurosurgeon who specializes in the treatment of spina bifida -- you will get a much more realistic prognosis. I'm willing to bet that a neurosurgeon will tell you that your baby has an excellent prognosis.

[jveprek]

Sounds a lot like my Madi, and I can tell you, it does not effect her quality of life. It's just life as she knows it and she rises above her challenges every day. She lights up a room when she walks in to it :). I would take some time to read over some of our blogs and see what our kiddos look like and what life looks like. I think it will be a relief for you to see how wonderfully our kiddos do :). Many of us have blogs in our signatures at the bottom of our posts.

[Jill]

All basic sb stuff that sounds really really scary when you are pregnant but is all totally manageable once your baby arrives. :)

Lisajoy explained it all pretty well. I'll just second the idea of reading blogs and seeing what life is really like. Your child will be amazing and light up your life. They'll be just like every other baby except for a few details. Things will be rough at times, at others you won't think twice about it. Mostly you'll just wonder how you got by without them. :)

[Jill]

Did you find out if it's a girl or boy? Is this your first baby?

[angel]

The others on here have explained it all to you. I just have to say i have a real issue with doctors who try to predict a reduced quality of life when they don't know anything about it. They don't deal with the babies after they are born and they never see what their lives are actually like. They should not be allowed to make predictions unless they are qualified and they absolutly are not. They scare these poor parents absolutly to death for no good reason. Just irritates me.

Angel

[spacecadet]

Thank you everyone. I'm in the UK and don't know anyone with SB. I can't understand why the Docs have given us such a bleak prognosis.

[janjanwhit]

the doctors give every single mother pregnant with a child that has sb the same prognosis. I think it mostly comes down to money - its cheaper to terminate.

[cadon's mum]

I'm in the U.K too, my son is 26 months, private message me if you need to chat. x

[Dodger67]

Welcome! :happy065:
Stick with us, we'll be here for you every step of the way.

[Amnada]

Welcome and congrat's on your pregnancy!
Sounds alot like my Nick's diagnosis as well (except that he had neural tissue, and his opening was smaller).
All of the brain and shape stuff is very scary, but all very typical with kids with spina bifida.

Like everyone else has mentioned, doctors are very negative when giving a prognosis for spina bifida. You need to talk with a pediatric neurosurgeon and/or rehab doctor. These are the doctors that actually know our kids, work with them and know what they are talking about when giving a prognosis.

My Nick does not have a low quality of life, and I do not expect him.
He is happy and healthy. Yes there are extra steps with regards to incontenance, and yes he needs extra help with his mobility. He has a shunt for his hydrocephalus.

My doctors did encourage me to consider termination, and I can't imagine how life would be without my Nick.
I encourage you to look at different blogs (mine is in my signature) to get an idea about how life with a child with spina bifida is like (some adults have blogs too)